I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Saturday, June 20, 2015

The colors of cancer

ROY G BIV Doxorubicin, the red devil. Methotrexate yellow. Mitoxantrone blue. Colors and nicknames. These days, the chemotherapy colors are more familiar hues to us than the ones found in a Crayola box. We will also get to see Propofol this week, which is white and opaque. But this isn't a chemotherapy agent. It is a sedation drug, which is kind of fitting, when you think about it, a liquid like White Out, a primer that blots out everything.

I wake up not sure where am, or why I am there, even on the rare occasions that I find myself in my own bed. Our situation changes so frequently. In my sleeping hours, I wonder if I escape to an empty landscape. I do not remember my dreams anymore.

Perhaps my lack of dreaming comes from my late night reading. I looked over the consent forms for an investigational drug last night and considered the odds. The problems that we currently have are certain. The potential problems that we are signing on for are substantial. We have arrived at a place where there is no standard of care. There are no obvious answers. Dan and I are required to make difficult choices for both of our children, all of which carry significant consequences.

We have been doing this for years, but it somehow doesn't get any easier with practice.

I am writing, but not writing well or easily. This leads me to believe that maybe I am dealing, but not dealing particularly well. Perhaps though, it is just because we are so bloody busy. And I am so tired.

Interrupted just now by rounds, I learned that the beat down has begun. The anticipated dip in blood counts has commenced for my son. These counts will continue to drop until we are required to transfuse, repeatedly. Brent will be wide open for infection. Knowing this, we will continue the Cookie Monster blue medicine for another two days. And then we will add another drug, which will drive down his marrow even further.

Brent is currently doing very, very well, I remind myself. This is a big breadcrumb.

Pick your poison. Brent joked that we literally did this ten days ago, when we met with a group of doctors and learned that his leukemia had infiltrated the lymph nodes. The disease has to be controlled before he can go to transplant, using the perfectly matched marrow that his brother Alex offers. The menu had been filled with all sorts of unappetizing things. Brent helped select his own poison, at fifteen.

Lauren will have surgery this week to deal with a grey area in her grey matter. Dan and I had to decide with her, as a twelve year old, about how to manage the tumor that is slowly growing in her brain. I looked over the series of black and white MRI images with her doctor and saw the changes.

There were no clear answers offered from the medical folk, and the nuanced opinions all required that we take the lead. The Ramers decided to deal aggressively with this, having experience that suggests that nothing improves with the wait. We will wait only until Thursday, when we will have two rooms on the pediatric oncology floor.

It will be a busy week in cancerland. I would love to vacation somewhere else, but the Ramers are together, at least.

My nephew just came to visit, a ray of sunshine on this drab day. He is a reminder of the outside world. Another breadcrumb. Eric shared the wonderful things that he is learning. His visit reminds me that this day is one to celebrate, because it is filled with love, with wonder, with joy.

Despite our burden, or perhaps because of it, all of our days are worth celebrating, because all of our days are clearly filled with love. I really need to focus on this part, and put the technicolor cancer options behind me now. Decisions made, I must leave it in God's hands as we move forward.

1 comment:

Prayers unending. For peace, and strength, and comfort...and more peace. For your families amazing ability to find humor and joy and love in this "new normal" you find yourselves in. You all are on my mind, and in my heart.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.